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Patient advocate critical of federal Lyme disease framework

The federal government's new Lyme disease framework is a "huge disappointment" and ignores patient needs, says patient advocate Cecile Gough who believes $950 million is needed to help the current number of Canadians suffering from Lyme disease.

The federal framework, announced May 30, includes $4 million to establish a Lyme disease research network, and improve diagnosis and treatment, but it does nothing for people suffering with the disease right now, said Gough.

"There's no emergency strategy," Gough told CBC Kitchener-Waterloo.

"They're allocating just $4 million for research, and that sounds like a lot of money, but when I spoke in front of Parliament for the first time, I told them we needed $950 million dollars."

That number, said Gough, is based on data analyzed by non-profits including the Canadian Lyme Disease Foundation and takes into account how much people with Lyme disease are spending to get treatment out of country — something Gough did last year, after being diagnosed with Lyme disease in 2014.

I have late-stage Lyme disease. Why am I not worthy?- Cecile Gough

"Yes, it's great to have $4 million towards research. That is a drop in the bucket when you look at funding that is going toward other infectious vector-borne diseases like Zika, West Nile virus. We need more funding."

Gough, who was an oncology nurse before she fell ill, was part of two federal roundtables that contributed to the new Lyme Disease Framework, but now feels her testimony fell on deaf ears.

"I speak with what I know. And there's not one Canadian in Canada that would be denied access to chemotherapy or radiation if they had cancer. I have late-stage Lyme disease. Why am I not worthy?"

Hear her full conversation with The Morning Edition host Craig Norris, in the audio below.